Christmas came early for an Abilene, Texas, family whose two-year-old daughter is home today after spending her entire young life being treated at a Fort Worth hospital.
Adalynn Willett was born with her intestines and liver outside her body. The toddler went home for the first time this week after spending 850 days in Cook Children's Medical Center.
"She is very excited to be home," says her father, Bryan Willett. "She is full of joy."
Her trip home was a long journey in the making. Over two years ago, Adalynn was born with a birth defect in her belly wall. All of her intestines and her liver were outside of her body. The condition is known as omphalocele, and doctors discovered it when Adalynn was still a fetus. After her birth, her parents thought the hospital stay would only be about three months. Twenty-eight surgeries and countless hours of physical therapy later, the young girl walked out of the hospital, the only home she had ever known.
Hospital staff had become her extended family and the sense of pride in her condition is evident. "The fact that we were able to manage it so that she is going home for Christmas is nice," says Adalynn's attending physician, Dr. Nancy Dambro. And, after spending almost every day with the young child, Dambro notes the trip home is not bittersweet. "You'd think it is, but it is not," adding, "Her job is not to be here every day being cute and smiling at me and cheering me up on my rounds. Her job is to go home and become a productive human being."
Omphalocele is extremely rare. Each year, about 1 out of every 5,386 babies born in the United States is born with the abdominal abnormality, according to the Centers for Disease Control. Adalynn's condition posed an even bigger challenge for the more than half a dozen physicians and medical staff at Cook Children's because, unlike most cases of omphalocele, Willett's entire intestinal system was outside her body. Known as giant omphalocele, such occurrence happens in only 1 out of every 10,000 babies born in the U.S.
Over the course of two years and several stages of surgeries, a team of doctors that included a pediatric surgeon and a plastic surgeon were able to put all of the young girl's vitals back inside her tiny body. And, Tuesday night, she slept at home in her bed for the first time. "It was very emotional to see her," says Serafina Sevallos, after watching her daughter sleep last night. "We waited so long for her to come home and actually getting her home is amazing. She's come a long way."
There are a few more steps before Willett is given a clean bill of health. She has a tracheotomy to help offset the pressure the intestines are putting on her lungs, an IV and a feeding tube to help provide her with nutrition. Doctors will likely remove her tracheotomy next spring once the flu season passes. As her body adjusts to the reconstruction, the IV and feeding tube will eventually also be removed. Dambro says Adalynn's chances for a normal life are high. "She will need care for a long time, but there is hope that she will not need lifelong care."
Adalynn's parents will now begin to settle into a daily routine with their only child and are looking forward to celebrating the holiday. "Every holiday that's come around for the past two years has been spent in the hospital," says her dad. "It's heartbreaking. Now, it's going to be back flips when we spend Christmas with the family."